Day 4 Today’s Nudge: What really stresses you out, and how to do take care of yourself when you’re in the midst of *waves at all that*.
It seems now days the most stressful thing for me is my health issues and what all has gone one in the past 6 years. It cost me my job, my identity and my health. If you read back through this blog you will see it has been a journey and it seems just as I am getting on top of it all something comes along and knocks the slats out from under me and I have to start again.
I am a tenacious critter to say the least. I have to accredit my Mother, Aunt, and Grandmother for making me the strong woman I am. I was brought up poorer then most but back then I didn't think I was much different then any of my friends or actually anyone else. I couldn't do a lot as a child cause we just didn't have money for music lessons, sport uniforms etc. I started working as a baby sitter when I was about 12 years old to make money to buy things I wanted and the family couldn't afford. My mother worked and when to school when I was 11-12 years old and it was expected I would help around there house. There was no 'extra' money to speak of ever.
I married the first time thinking I would have a bigger and better life then my mother and family but turns out I jumped out of the skillet into the fire and it was so much worse being married to an abusive asshole like I was so after two weeks (yes only 2 wk) I jumped ship! Lee was a physically abusive person and liked to use me as a punching bag. He didn't like being married and tied down so bringing another woman into our bed while I was at work was just a okay by him.
I married again 5 years later to an awesome man and have been happy. We have 2 kids and they are both married with good partners! My son and his wife have 3 children and my daughter has yet to start her family but has 3 dogs that think Grandmadog is the best!
I have PTSD, Depression and a lot of ups and downs to take care of myself and get through all the crap I have started going to a talk therapist each week. I was really reluctant to do so but now don't see how I ever made it through some of my most trying times recently without her! I talk with her and see helps me see the problem and issues through totally different eyes. I tried medications for a while and medications just seem to exacerbate the problem for me so I am happy doing it without drugs.
I love crafting and try to spend time doing something each day but since my surgery I am having trouble doing anything at all. I just lack any creativity or motivation. I was hypoxic and I have some memory and ability issues right now that the doctor has told me will come back in time. I hope so and I am hoping blogging will help.
Have a great day...
Tuesday, September 5, 2017
Sunday, September 3, 2017
Day 3 Today’s Nudge: Write about something you used to believe
Day 3 with Blogging Along with Effy!
Today’s Nudge: Write about something you used to believe that you no longer believe and how that shift in belief has changed things for you.
If you would like to blog along click the link to the right!
I think the biggest thing I used to believe in and no longer do and its impact on my life has been the belief in God and religion. As a kids we were brought up in a Pentecostal Holiness/Assemblies of God church. It was a safe haven when I was a child. My home life was a little screwed up and different then most and I broke off from the church when I was about 17 years old because I woke up one day and realized they condoned the screwed up differences.
What kind of screwed up differences? Racism, xenophobia, sexism, faith healing over medicine, wife beating and subjugation...you know that kind of differences. They believed in faith healing, speaking in tongues, purification by the holy spirit, baptism by fire and water. From a small child I had been told I was lesser then man cause I was made from man and therefore not as good. I don't remember how many times I was told the story of the Great White Throne and how I would be judged as unfitting to go to heaven. The AG believed that when Jesus came back that all the dead would rise and walk the earth for 1000 years with Jesus as its ruler.
I still can't believe I bought into that doctrine. That I allowed myself to be used and manipulated like that! My sister brought a black girlfriend to church with us one Sunday and they wouldn't let her in because she was dressed inappropriately! She was wearing a skirt and sleeveless shirt...but truth of it was her skin was dark. The deacons stood at the doors and shook hands with those coming in but looking back I realize it was to keep the undesirables out. I think that's the first time I realized something wasn't right in our little church. I loved going to church and all the fellowship, the pot luck dinners, the interaction with friends and family it was the highlight to my life during some troubling times.
My Grandmother and Mother were the ones that would take us to church. My Grandfather didn't want any part of what he called "that religious bullshit!" When my Mother divorced the church treated her like she was toxic. I was 13 at the time. I actually heard a couple old gossipy bitches saying my mother was "a harlot and would burn in hell for not doing right by my father!" How can it be 'not doing right' when it was him who went out and had sex with other women and left us at home without much money or anything? He was in the Navy and would be gone for months and months and my mother worked 2 jobs trying to stay afloat. My mother refused to go to church from that day on and I started watching what was going on around me a little closer.
I didn't just 'quit believing' I tried going to other church of protestant beliefs. I went to Baptist, Methodist, Church of Christ etc. but I saw the same type of subjugation and control in all of them that I had seen in the Pentecostal Holiness/Assemblies of God church. It was the 1960's and early 70's and a lot of change was going on. I decided I could change. I felt from time to time to give it another chance but I never felt the spirit and I just didn't go back. It just wasn't for me! I could keep going on but I won't.
I don't like the term Atheist and tell people I am a Secular Humanist to avoid the flak that comes with telling them you don't believe. How can you believe in just one god when there are thousands or millions as some believe. How can you condemn those that don't believe in the same god you do? I have found out that I can be spiritual and not believe in something I can't see! I take responsibility for my own actions and don't take the attitude that a Deity made me do it.
Today’s Nudge: Write about something you used to believe that you no longer believe and how that shift in belief has changed things for you.
If you would like to blog along click the link to the right!
I think the biggest thing I used to believe in and no longer do and its impact on my life has been the belief in God and religion. As a kids we were brought up in a Pentecostal Holiness/Assemblies of God church. It was a safe haven when I was a child. My home life was a little screwed up and different then most and I broke off from the church when I was about 17 years old because I woke up one day and realized they condoned the screwed up differences.
What kind of screwed up differences? Racism, xenophobia, sexism, faith healing over medicine, wife beating and subjugation...you know that kind of differences. They believed in faith healing, speaking in tongues, purification by the holy spirit, baptism by fire and water. From a small child I had been told I was lesser then man cause I was made from man and therefore not as good. I don't remember how many times I was told the story of the Great White Throne and how I would be judged as unfitting to go to heaven. The AG believed that when Jesus came back that all the dead would rise and walk the earth for 1000 years with Jesus as its ruler.
I still can't believe I bought into that doctrine. That I allowed myself to be used and manipulated like that! My sister brought a black girlfriend to church with us one Sunday and they wouldn't let her in because she was dressed inappropriately! She was wearing a skirt and sleeveless shirt...but truth of it was her skin was dark. The deacons stood at the doors and shook hands with those coming in but looking back I realize it was to keep the undesirables out. I think that's the first time I realized something wasn't right in our little church. I loved going to church and all the fellowship, the pot luck dinners, the interaction with friends and family it was the highlight to my life during some troubling times.
My Grandmother and Mother were the ones that would take us to church. My Grandfather didn't want any part of what he called "that religious bullshit!" When my Mother divorced the church treated her like she was toxic. I was 13 at the time. I actually heard a couple old gossipy bitches saying my mother was "a harlot and would burn in hell for not doing right by my father!" How can it be 'not doing right' when it was him who went out and had sex with other women and left us at home without much money or anything? He was in the Navy and would be gone for months and months and my mother worked 2 jobs trying to stay afloat. My mother refused to go to church from that day on and I started watching what was going on around me a little closer.
I didn't just 'quit believing' I tried going to other church of protestant beliefs. I went to Baptist, Methodist, Church of Christ etc. but I saw the same type of subjugation and control in all of them that I had seen in the Pentecostal Holiness/Assemblies of God church. It was the 1960's and early 70's and a lot of change was going on. I decided I could change. I felt from time to time to give it another chance but I never felt the spirit and I just didn't go back. It just wasn't for me! I could keep going on but I won't.
I don't like the term Atheist and tell people I am a Secular Humanist to avoid the flak that comes with telling them you don't believe. How can you believe in just one god when there are thousands or millions as some believe. How can you condemn those that don't believe in the same god you do? I have found out that I can be spiritual and not believe in something I can't see! I take responsibility for my own actions and don't take the attitude that a Deity made me do it.
Saturday, September 2, 2017
Day 2 Blogging along with Effy Wild
TODAY'S NUDGE
2) What do you really want?
Now that is a good question! I want a lot of things...
I have of late had issues with memories and I think the things I want most can't be bought or sold. I lost 3 units of blood during my surgery and while they gave the blood back to me I had a period of hypoxia and my oxygen stayed low even after surgery. I remember asking the nurse why my oxygen saturation was staying in the 70's...normal is 100% of course. I am an old ICU/ER nurse and to have a low blood oxygen saturation is not something I would want at all. When you have the low sats for a period of time the brain gets a little pissed and starts to swell... I think I will regain most of my function or at least I am wanting to regain all my mental acuity asap.
One of the things the oxygen saturation issue has caused that I have noticed is my inability to do my art. I don't seem to have an original thought of my own and I can't seem to get up much more then sit here and diddle on the computer. I have trouble forming words and sentences and I forget just about everything short term. I know the doctor said that it was short term and it most likely would all return fairly quickly but I am impatient I want it now. I want to sit down in my craft studio and create something original, to get lost in the cutting, pasting, painting and creating something maybe only I love.
I have been having problems with my Fibromyalgia and chronic fatigue since surgery. There were a couple of weeks I had a hard time getting out of bed. I would go to bed at 12 midnight and not get out of bed till 2-3 pm the next afternoon. I had trouble sleeping and while I thought I was the medications were not letting me get good sleep so I quit them all. I still take an occasional Norco or Tramadol when the pain in my back gets bad enough but it seems the narcotics tend to make my ability to deal with the fibromyalgia next to impossible. I am not lying when I say I live constantly in a 4-5 pain world all the time... 0 is no pain-10 is I am ready to go to the hospital. My back is the least of my pain now and it takes forever to get this other under control. I want that control again. It took me years to get it when I first got sick and when I woke up post op it was gone.
I have a family that is very supportive and a husband that stands by me and helps me to the best of his ability...huh? Well I am one of those "I will do it myself" people so I tend not to tell him when I need help or need him to do something. Like he says all I have to do is ask but like I told him I don't ask and he doesn't mind read my needs. I want to be able to ask for help and not take it as a put down of me, myself, and I when I do.
I could go on and on but won't. I don't want for much in the reality of goods or things. I would like more money, more clothes, a bigger house, etc etc but I don't want for it. What I already have is more then a lot of others have.
If you would like to blog along click this link and it will take you to Effy's blog.
2) What do you really want?
Now that is a good question! I want a lot of things...
I have of late had issues with memories and I think the things I want most can't be bought or sold. I lost 3 units of blood during my surgery and while they gave the blood back to me I had a period of hypoxia and my oxygen stayed low even after surgery. I remember asking the nurse why my oxygen saturation was staying in the 70's...normal is 100% of course. I am an old ICU/ER nurse and to have a low blood oxygen saturation is not something I would want at all. When you have the low sats for a period of time the brain gets a little pissed and starts to swell... I think I will regain most of my function or at least I am wanting to regain all my mental acuity asap.
One of the things the oxygen saturation issue has caused that I have noticed is my inability to do my art. I don't seem to have an original thought of my own and I can't seem to get up much more then sit here and diddle on the computer. I have trouble forming words and sentences and I forget just about everything short term. I know the doctor said that it was short term and it most likely would all return fairly quickly but I am impatient I want it now. I want to sit down in my craft studio and create something original, to get lost in the cutting, pasting, painting and creating something maybe only I love.
I have been having problems with my Fibromyalgia and chronic fatigue since surgery. There were a couple of weeks I had a hard time getting out of bed. I would go to bed at 12 midnight and not get out of bed till 2-3 pm the next afternoon. I had trouble sleeping and while I thought I was the medications were not letting me get good sleep so I quit them all. I still take an occasional Norco or Tramadol when the pain in my back gets bad enough but it seems the narcotics tend to make my ability to deal with the fibromyalgia next to impossible. I am not lying when I say I live constantly in a 4-5 pain world all the time... 0 is no pain-10 is I am ready to go to the hospital. My back is the least of my pain now and it takes forever to get this other under control. I want that control again. It took me years to get it when I first got sick and when I woke up post op it was gone.
I have a family that is very supportive and a husband that stands by me and helps me to the best of his ability...huh? Well I am one of those "I will do it myself" people so I tend not to tell him when I need help or need him to do something. Like he says all I have to do is ask but like I told him I don't ask and he doesn't mind read my needs. I want to be able to ask for help and not take it as a put down of me, myself, and I when I do.
I could go on and on but won't. I don't want for much in the reality of goods or things. I would like more money, more clothes, a bigger house, etc etc but I don't want for it. What I already have is more then a lot of others have.
If you would like to blog along click this link and it will take you to Effy's blog.
My summer! Day 1 I'm Blogging Along with Effy!
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| https://wp.me/p1ZQyo-22l |
Today’s Nudge: Start where you are. What’s going on with you? What’s on your heart/mind today, right now, at this moment. No back story necessary. No disclaimers. What’s up, buttercup? Spill it.
My last post on June 23 was just 3 days away from my back surgery... I had been having worsening symptoms of low back pain and inability to walk or get around well on my own. That is an understatement to tell the truth! I had grade 1 spondylolisthesis where the vertebrae and disc's are slipping. What were my symptoms?
- Back pain that shot down both cheeks of my butt
- The pain radiated to the outside of my thighs and down my legs.
- Both legs would start to ache and feel so weak if I did most any activity. Walking around Walmart or even cooking dinner would cause them to ache and my toes in my right foot would go to sleep. What was funny was the achiness would settle on the tops of my feet not the bottom and I thought it was the sandals I would wear causing it.
- I had so much trouble walking I tended not to go to any stores without the mobility carts to shop. I started walking with a cane to help me balance.
- I would fall around a lot. I fell on Christmas Day 2015 and broke my left knee, hurt my back, and hip.
- I had trouble sitting for any length of time cause my low back would hurt and if I tried to bend over I had shooting pains in my back and legs.
- I was one of the lucky ones that had problems with incontinence. I had gone to a urologist and paid megabucks for tests.
- I became depressed and started going to a psych/talk therapist at my daughters urging.
I tried conservative treatments to try an alleviate the pain and other issues but nothing seemed to work. I took anti-inflammatory drugs over the counter and prescription, steroids, anti-inflammatory diet, eventually ended up in a pain management clinic where I received a back brace and injections in my spine by a pain management doctor. Nothing seemed to work to help my pain or other problems.
In February of 2017 the pain management doctor told me that I needed surgery to fix my back and referred me to a neurosurgeon!
I had to wait from February to the end of May to get into see the doctor. First thing he did was to take X-rays and get and MRI...my MRI showed a Grade 1 with 20-25% slippage in the lumbar vertebrae!
As you can see it doesn't look like much is off but it definitely caused me a lot of issues.
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| You don't have to look too close to see the slippage! |
Doctor Cochran told me that I needed a lumbar laminectomy and spinal fusion and the sooner the better to help stabilize my spine cause it would only get worse! I had been told this by two other doctors so I told him that I was ready to get rid of my 'issues'! Heather had come for a visit on Fathers Day and had gone with me to the doctor so the surgery was set up on the following Monday so she could be here.
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| Side view of hardware and new discs...I have titanium screws! |
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| frontal view post op |
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| My Cheering squad in the waiting room! |
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| Me pre-op |
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| me post op |
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| My incision. I can't even tell looking in a mirror now. Impressive considering all the work! |
Friday, June 23, 2017
Neurofatigue
A friend of mine recently had brain surgery. Sharron had a smallish...boulder size tumor sitting on top of her optic nerve that she had a horrible time getting anyone to listen to her about needing help with. After about 5 months of headaches and putting up up with the damn thing the doctors at Stephenson Cancer Center in OKC listened to her and removed the darn thing. It was benign but still a relief when it was out! I love it when someone tries to explain away a benign something as not being as bad as a malignant something. Malignant means it can spread other places while benign means it usually stays in that one spot. Her tumor kept growing and like with malignant tumors there is only enough space for the brain and not much else so she was having a horrible time.
Did you read the spoon theory post before this one? The one on fatigue? Well Sharron posted this article on Neurofatigue...and the invisible consequences. It is another example of neuro fatigue and some good hints on how to combat it. Most brain injury people have some degree of this type of fatigue and it would only stand to reason that people who have fibromyalgia or other diseases that affect the brain would too!
Don't you love this little guy and his depiction of Neurofatigue? Do you ever have days like this? I know I do! Call be a bowl of melted jelly and you have the description correct! I can't stand light, noise, heat, cold, I turn off the TV, radio, computer everything. I am not feeling feel well at all and can't stand any outside stimuli...all I want to do is veg out in my bed!
The article talks about different things you can do to help with the fatigue and get the rest you need. Check it out it is worth the read!
Did you read the spoon theory post before this one? The one on fatigue? Well Sharron posted this article on Neurofatigue...and the invisible consequences. It is another example of neuro fatigue and some good hints on how to combat it. Most brain injury people have some degree of this type of fatigue and it would only stand to reason that people who have fibromyalgia or other diseases that affect the brain would too!
The article talks about different things you can do to help with the fatigue and get the rest you need. Check it out it is worth the read!
Thursday, June 8, 2017
Spoon theory
In an earlier post I wrote about the spoon theory but can't seem to find it now! I thought I would rewrite it in hopes that if anyone is having issues with their disability this will help them understand it better.
There are a lot of articles out there and a lot of people that are claiming ownership of the theory but it truth it has been around for a long, long, long time! Wikipedia says The spoon theory is a disability metaphor used to explain the reduced amount of energy available for activities of daily living and productive tasks that may result from disability or chronic illness. Spoons are a tangible unit of measurement used to track how much energy a person has throughout a given day. Each activity requires a given number of spoons, which will only be replaced as the person "recharges" through rest. A person who runs out of spoons has no choice but to rest until their spoons are replenished. According to Wikipedia the term spoons was coined by Christine Miserandino in 2003 in her essay "The Spoon Theory" that she posted on her website ButYouDontLookSick.com
When I first 'came down' with Fibromyalgia I tried to keep on keeping on doing all the things that I had done all my life. I found out pretty quick that was a road to disaster for me and I would find myself doing more harm then good. I just couldn't believe that my fatigue, brain fog, etc was anything more then my working too many extra shifts at the hospital so I cut them out and I still had issues. I figure I must have been issued 100 spoons a day back in the old days but when I got sick in 2009/10 someone stole 95 of spoons and left me with only 5 and left me wanting/needing more. I found out really quickly that I couldn't cook dinner, vacuum, do laundry, go to the store, or garden all in the same day! Dinner usually took a spoon, laundry about 3, shopping at Walmart all 5 and forget the garden unless I broke it into manageable bits. I learned that I had to prioritize and schedule time to rest and recover or I flared up and stayed down for days and sometimes weeks.
Simple things like getting a shower and getting dressed some days took all 5 spoons and I climbed right back into bed! It has taken me years to finally learn to manage my spoons and cope with life. I used to feel so guilty that I am unable to do things I used to do. I have found out that I have to be the #1 priority in my life or nothing gets done. I have lost friends because they seem to think I am a flaker and not being truthful with them about how I feel and why I can't donate time and energy to stuff I used to do routinely. Their loss cause on my good days I am still awesome! I can't hike or even walk through Walmart anymore without using up my allotment of spoons. Luckily as time has progressed and I have learned to manage my spoons I have gotten more spoons and the ability to do more. I will never be back to 100% but I am better! I live each day at a time and I never count on the same number of spoons to spend in a day because if I count on 20 I end up with 5 or vice versa. I am a spoonie (embrace the spoon theory) but there are some that aren't. I read this article on The Mighty the other day my Jennie Small entitled Why the Spoon Theory Doesn't Fit My Life and she has a valid point...it isn't for everyone! That is something else we need to remember...there is no one fixer upper for any group of people because we are all so different. We need to be tolerant of the difference.
There are a lot of articles out there and a lot of people that are claiming ownership of the theory but it truth it has been around for a long, long, long time! Wikipedia says The spoon theory is a disability metaphor used to explain the reduced amount of energy available for activities of daily living and productive tasks that may result from disability or chronic illness. Spoons are a tangible unit of measurement used to track how much energy a person has throughout a given day. Each activity requires a given number of spoons, which will only be replaced as the person "recharges" through rest. A person who runs out of spoons has no choice but to rest until their spoons are replenished. According to Wikipedia the term spoons was coined by Christine Miserandino in 2003 in her essay "The Spoon Theory" that she posted on her website ButYouDontLookSick.com
When I first 'came down' with Fibromyalgia I tried to keep on keeping on doing all the things that I had done all my life. I found out pretty quick that was a road to disaster for me and I would find myself doing more harm then good. I just couldn't believe that my fatigue, brain fog, etc was anything more then my working too many extra shifts at the hospital so I cut them out and I still had issues. I figure I must have been issued 100 spoons a day back in the old days but when I got sick in 2009/10 someone stole 95 of spoons and left me with only 5 and left me wanting/needing more. I found out really quickly that I couldn't cook dinner, vacuum, do laundry, go to the store, or garden all in the same day! Dinner usually took a spoon, laundry about 3, shopping at Walmart all 5 and forget the garden unless I broke it into manageable bits. I learned that I had to prioritize and schedule time to rest and recover or I flared up and stayed down for days and sometimes weeks.
Simple things like getting a shower and getting dressed some days took all 5 spoons and I climbed right back into bed! It has taken me years to finally learn to manage my spoons and cope with life. I used to feel so guilty that I am unable to do things I used to do. I have found out that I have to be the #1 priority in my life or nothing gets done. I have lost friends because they seem to think I am a flaker and not being truthful with them about how I feel and why I can't donate time and energy to stuff I used to do routinely. Their loss cause on my good days I am still awesome! I can't hike or even walk through Walmart anymore without using up my allotment of spoons. Luckily as time has progressed and I have learned to manage my spoons I have gotten more spoons and the ability to do more. I will never be back to 100% but I am better! I live each day at a time and I never count on the same number of spoons to spend in a day because if I count on 20 I end up with 5 or vice versa. I am a spoonie (embrace the spoon theory) but there are some that aren't. I read this article on The Mighty the other day my Jennie Small entitled Why the Spoon Theory Doesn't Fit My Life and she has a valid point...it isn't for everyone! That is something else we need to remember...there is no one fixer upper for any group of people because we are all so different. We need to be tolerant of the difference.
I just read an article on Spine Universe that says Fibromyalgia is a real disease...hmmm...I could have told them that! The article titled
Fibromyalgia Study: It's a Real Disease
The article talks about research being done by Dr. Guedj of the Centre Hospitalier-Universitare de la Timone in Marsaille France. Dr. Guedj was the lead researcher in a study examine blood perfusion (abnormal blood flow) as possibly being the cause of fibromyalgia! I am really excited about this because if proven positively they will start researching why there is abnormal blood flow and we will get to the bottom of the cause of fibromyalgia.
Right now Fibro and all its pain is merely a syndrome and not considered a real disease and I can tell you from personal experience it can cause all sorts of havoc in your life being "not real!" What kind of problems...well if I go to the ER I feel I get treated different with the diagnosis. I definitely have fibromyalgia cause I participated in a study where they drew lab and I was 100% positive...some were only 80% or less. The lab is only available for research purposes right now but hopefully will be out on the market in the future.
My proof I get treated different comes from years as working as an ER nurse. I went in with Chest Pain and when the triage nurse found out I had fibromyalgia I was given a seat in the waiting room and not put on a monitor or taken taken to an exam room. If I had not had that diagnosis on my chart I would have been treated much differently and would have been taken to the back immediately! Fibromyalgia patients are considered drug seekers and treated much differently... I actually was told I needed to lose weight and exercise more and my pain would go away! Well...doctor...I don't think so!
Anyway read the article...it is a possible reason for Fibro and still under research!
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